I’m not really a b*tch, I just play one in your life.

I have a BIG apology to make. The Southwest Airlines counter at Denver International Airport got a giant taste of crazy on Sunday thanks to my multi-car emotional pile-up. Thankfully, there weren’t any casualties, but my insurance rates are definitely going to go up.

Here’s what went down: As many of you know, I’m upset with Memorial Sloan Kettering Hospital. They have been poor at communicating with us about treatment plans and what’s next for Ben. Whenever we’ve seen his doctor, he sticks his head in and says something like “I know we need to chat…” and then we don’t see him for the remainder of the visit. This was to be Ben’s fourth cycle of Hu3F8 with no end in sight and I’ve been anxiously awaiting answers. We were supposed to come to NYC for Ben’s fourth round two weeks ago, but, thanks to the vacation plans of our social worker, it didn’t happen.

I filed that frustration away until a coordinator called to ask us if we’d consider pushing Ben’s therapy out until August because they were overbooked with kids. First of all, that’s very sad to hear that there’s such an influx of neuroblastoma kiddos. It makes me sick. But secondly, they’d already pushed us out because of the scheduling snafu from the week prior, AND, pushing Ben out one more week would be in violation of the study agreement (needs to have these therapies within eight weeks of each other) so I raised a ruckus. I was told that they could “skirt around” that violation if we would consent to moving and I said no. Well, I said some other things, too, but the message I was trying to get across was no. Matt reminded me to “not shoot the messenger,” but since the people in charge weren’t communicating with us, what option did I have? I didn’t shoot her, but I did stomp on her foot a little. Actually, it was more like a forceful tap.

So, we moved forward with making plans to leave last Sunday. Sloan Kettering forwarded information on how to get a free round-trip voucher on Southwest. Hooray! This was awesome news to me. I called the number they gave me to set up use of the one-time-only “green pass.” The person assisting me was amazingly kind and booked us non-stop from Denver to LaGuardia. He told me to pick up the voucher at the front desk when we checked in. Easy Peasy!

I didn’t pack until the night before our trip. This is my usual program, mostly because I despise doing laundry and I’m a hideous procrastinator. Regardless, it helps me focus on packing instead of brooding about treatment. Matt and Madeline dropped us off at the airport Sunday morning and we went inside to check in and get our vouchers.

Ben was already tired (and, I’m sure, anxious about a week of therapy.) But I was in a pretty good mood. The line was atrocious to check in, so I pointed Ben in the direction of some chairs. A nice Southwest agent overheard me talking to Ben and directed me to the front of the massive line. Awesome! Everything was going wonderfully. I was called forward by my “new friend” Sherrin, and said, “we’re here to pick up our green pass for travel.” And she said, “you’re supposed to get those from the hospital.” And I said, “but I live in Denver and the hospital is in New York and all they sent me was this email.” I showed it to her. She wasn’t impressed. She said she couldn’t help me and my entire body tensed as the crazy started to flow. I said, “but your reservations agent told me I’d pick them up here at the counter!” And she said, “Well, I wasn’t on the phone and I can’t be held accountable for what he told you.” The words shot out of my mouth like machine gun ammo, fast and loud. “You. Need. To. Find. Someone. To. Help. Me. NOW!” She gave me “the look” that every customer service agent dealing with someone they’re annoyed with has down pat, which promptly sent me over the edge. Then came the tears. And the story. With hyperventilation. “mysonhasbeenbattlingcancerfor11yearsandwehavetotraveltogethistherapy!” Her face softened a bit and she retreated to get a manager. He was mean, though, and kept shouting at me to show him the email I received. By that time I was in hysterics. One of the other agents was crying, too. She came over to hold my hand, which made her an instant ally. So, I asked her if she could get this guy to stop being a dick to me. Yes, I said those words. And he threw my phone on the counter and said “I don’t have to help you at all.” Then they all went into a secret room in the back for about 20 minutes, the long line of people undoubtedly cursing me under their breath.

Of course, this is a Sunday, and nobody was at the hospital who could help us. I called Matt. Mostly just to vent, because, in all honestly, what could he do? I checked on Ben, who was melting down, too. That made me feel like total crap. He came over and hugged me. I told him that everything would be okay and that we would get it figured out. We just had to go with the flow. Then he said: “I don’t understand why that hospital doesn’t care about me.” He’s never around when we’re on the phone with them so he doesn’t know all the behind the scenes stuff. Yes, he knows when plans change and why they change, but if he feels like they’re not treating him properly, then there’s a huge problem.

Sherrin came out of the back and the manager dude left without giving me a kiss – or throat punch – goodbye. She said “we’ll get you on this flight but you MUST get that voucher from the hospital.” I leapt over the baggage scale and hugged her with all my might. She said “I lost my son in a car accident a few years ago. I saw the terror in your eyes of not being able to get your son what he needs.” I softly repeated how sorry I was as she held me tight. We’re all fighting some sort of battle, my friends. We need to be gentle with one another.

Then a wonderful man with a wheelchair swooped Ben up and whisked us past the horrendous line at security. The drug dog sniffed me briefly but didn’t make a fuss… all I had was oxycodone and a variety of anti-anxiety meds, which, despite being prescribed to Ben, I did think about snagging one or two for myself.

And since then, we’ve had a challenge each day. Small by comparison, but challenges nonetheless. I got the precious vouchers from someone other than our social worker. She blamed someone else for the snafu, who blamed Matt for not letting them know when we were traveling, who called bullsh*t on the whole thing, because they KNEW when we’d be traveling. I think they’re servicing too many children because the ball is getting dropped. A LOT.

So, let’s preserve my mental health by finding a cure for Neuroblastoma sometime soon. Because it is all about me.

And my sincerest, deepest apologies to Southwest Airlines for being a crazy b*tch.

 

Through my daughter’s eyes

Starting with a wee rant: I’m super size mad with Ben’s hospital in NYC. They are really messing with my quest for inner peace. I know I have control over my own emotions, but they keep throwing crow bars at my happiness and I’m getting tired of dodging them. Grrrrr.

So, here’s the rundown: Ben was due to start his next round of antibody therapy July 13th. With Madeline on summer break I thought it would be nice to take her along with us, and to add to the fun, I scheduled a last minute, pre-NYC mini-vaca to the Great State of Ohio to visit family and friends. I only booked the tickets to Ohio because we were waiting on the approval from our social worker in NYC to travel on from Columbus to NYC for therapy. It’s a pain in the butt, but there’s a reason why. See, there’s a whole legion of people who have abused the system over the years, folks using the Ronald McDonald House and travel privileges for their own vacation time instead of care for their sick child, so every tiny detail has to go through our social worker and she’s in charge of approving when we travel. Once we got the lab results that Ben was medically cleared for another round, our social worker needed to let the Ronald and a charity we work with to get flights know that we were cleared to come. However, she went on vacation without completing the task. It’s no secret that my patience with this NYC facility is near the “hot liquid magma shooting out of my head” level, so we told them to reschedule Ben for the end of July instead. More Grrrr, but at least we have some extra time to get a solid travel plan in place.

Anyway, while we were in Ohio, I celebrated my 47th birthday. I’ve never really stressed out about numbers before – each birthday is undoubtedly a gift – but 47 struck me with a feeling of “Holy crap, I’m on the downward slide to 50.” And, for whatever reason, I’ve decided that by the age of 50, people should really have their sh*t together. Here I am, a well-educated, yet unemployed individual who has no security for her future. No retirement plan. No investments. No savings. No adult stuff. If I were to die, my children would inherit nothing.

I’m 47 and I’m worth nothing. Honestly, I tried to set myself up for a much better life through getting a solid education, but even if I could hold a “real job” with the rigors of a sporadic schedule hanging over my head, I wouldn’t want to. Because despite the lack of money, my life is very rich.

I know my primary job is to care for Ben throughout his medical journey. And I know I kick ass at that. My dad honored me with the ultimate compliment recently. He said that he believes Ben has done so well for so long because of my love and support over the past 11 years. I’ve been steadfast in letting Ben know that I’m with him, no matter what. And, I’ll be honest, there have been times that I didn’t want to. I was scared. I was exhausted. But I knew that Ben was more scared and more exhausted, and my job as his mother was to give him every single bit of me. I’m pretty confident that I did just that.

Now, with Madeline, it hasn’t been as consistent. I’ve missed first days of school and parties and field days and performances. She’s had to rely on the kindness of others to help her when Ben has to travel. I feel like I’ve let her down time and again throughout her 11 years on this planet. So, when she gave me my birthday present – a jar she decorated and filled with 10 slips of paper listing things she loves about me – well, I felt the Universe give me a giant hug, letting me know that we’re all on the right track. Here’s what she had to say:

*You are such an amazing, strong person. *I love to snuggle with you. *I don’t think you know how funny you are. *You always know what to do in sad situations. *You’re very unique, and I love it. *I think you’re a great caretaker. *You always know what to say. *I love to hear about your future books. *I am so proud to call you my mom. *Just, thank you for being you.

Of course, as I’m reading each validation, the tears fell. They cleansed my weary soul of all the nonsense I think I’ve been doing wrong. My inner voice is dumb. It’s busy telling me all the times that I’ve failed. I think I’m going to listen to Madeline’s voice for a while. Because, in her eyes, I’m giving her what she needs.

And that’s priceless.

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A day of labor

*I’ve written about a lot of this before, but it won’t hurt you to read it again. Enjoy.

It was a Thursday morning when my water officially broke, one of the super disgusting line items that goes along with the “Miracle of Birth.” I was terrified and excited all at the same time – much like riding a roller coaster – except this ride would end with a beautiful baby in my arms instead of a mild case of whiplash. Although, my birthing experience probably had a little bit of that, too.

I was a newbie at the whole baby delivering gig, so I didn’t really have a good grip on what my body was doing. After exiting the shower on the morning of June 19, 2001, some water hit the floor that wasn’t shower related. I was officially due on June 22, but I’d heard a vicious rumor somewhere that full-term babies sometimes come a little bit before their due date. Oh, how I was ready to be a member of that club! My feet were so swollen. My back was miserable. And I was anxious to meet the little nugget who simply HAD to be ready for more living space by this point.

I called my OB/GYN office to explain what I thought had happened and they told me to go straight to the hospital. I called my boss on the way in to let him know I wouldn’t be coming to work because I was in labor, and (swear to God) he asked if I’d be in the next day. He had been very vocal for my entire pregnancy in letting me know what an inconvenience this would be for him. Knowing what we know now about Ben’s journey, I’m so thankful that he was only inconvenienced until Ben was about six months old. This cancer nonsense would have really put him in a bind. But enough about him.

We checked in to the hospital. They put my name on the big white board as a patient. I disrobed and got comfy in the bed, ready to meet my little person, only to be told by my nurse that I was wrong. My water hadn’t broke at all. It must have been the mucus plug that hit the floor (another disgusting line item in the “Miracle of Birth” experience.) I was unceremoniously discharged and did the waddle of shame down the hall as a nurse erased my name from the white board. There would be no baby coming today. And, my boss got his wish. I went to work the next day.

Since I was due on the 22nd, my OB wanted to see me on the 21st. I arrived for my appointment, and like every other pregnant woman in the world, I had to pee. STAT! I asked for the urine sample cup from the receptionist and headed off to do my business. As I was positioning myself over the toilet with the cup in hand to collect my sample, water exploded everywhere. Having my confidence shaken a couple of days before, I decided to not share with the staff what I thought had just happened. God forbid I be wrong about this two times in a row. They might decide that I’m completely inept and had absolutely no business trying to raise a child. So, I said nothing. I left my “sample” on the back of the toilet, cleaned up as best as I could, and went back to the waiting room.

I told Matt what I thought had happened. He said excitedly, “Go tell someone!” and I’m all like “No way! You!” and he’s all like, “No! You!” In a room full of very pregnant, semi-cranky expectant mothers, we were having a back and forth diatribe reminiscent of a couple of bickering siblings. We didn’t have to argue for long, because the nurse came out holding my sample and asking for “Sarah.” I looked at Matt with a bit of horror, like I was going to get a detention or something. I tentatively raised my hand, knowing I was about to get castigated. She asked, “What did you just leave in this cup?” All the other women in the classroom were raising their hands as if to say “I know! I know! Pick me! I know what that is!” And I answered her with the inflection of a question, “My water just broke?” She sternly nodded her head and told me to head straight for the hospital. All the other women groaned as if to say, “No fair. She doesn’t even know what she’s doing. Why does she get to go first?”

The next 26 hours were horrifying. We’ll just fast forward through all the scary bits of extreme high blood pressure and distressed baby stuff and head straight for the actual miracle: at 11:48 am on Friday, June 22, 2001, the young man who has so dramatically changed my life in wonderful ways was born.

Benjamin Harrison Brewer, you ARE a miracle, in every sense of the word. You arrived wearing a three-piece suit and holding a briefcase, ready for business. I’ve never known a more serious child. But that biting sense of sarcasm (that I’ll take hereditary credit for) and absolute ability to wow everyone with your beautiful manners, compassionate spirit, and aura of nothing but love, makes you such a remarkable young man. Not only am I proud to simply know you, but I’m over the moon to hold the status of being your mother. Never has there been a more rewarding or beautiful job.

For never planning to be a mother, I sure hit the jackpot in the kiddo department. Thank you, Ben, for teaching me about love. I learn more from you every single day, and I look forward to all the wonderful things you’ve yet to teach me.

I love you, my dear son. Happy birthday. mom-ben-iii

Summer Son

There’s an element of every season that I love, but if I had to choose, summer is probably my least favorite. I’m very sensitive to heat and while I love being ON the water (preferably in a small craft like a sailboat or a canoe) I don’t love the beach. I’ll take a snowy mountain peak any day.

And since I was born during the summer, I never got to have a birthday party in my classroom. This always irked me. When I found out that I was pregnant with Ben and had a due date of late June, the lack of a birthday party during the school year was one of the first things that crossed my mind. Priorities, I guess. I just wanted my unborn child to have a better life than I’d had. A birthday party during the school year is a child’s basic right. Ask any summer baby. They’ll all agree.

The impending onset of this summer has had me in a jumble of nerves. In my daily meditations, I tried to explore why I was so anxious about this coming summer, other than the basic disdain for sunburns and heat strokes. With Ben’s quarterly scans usually hitting around the start of each season, I came to the realization that every single relapse he’s had has occurred during the summer months. He had emergency surgery on my 41st birthday, which resulted in his first relapse. His second relapse was right after his 12th birthday. And then his third relapse was just a year later, on July 4th, 2014. Three recent summers overshadowed by recurrent disease. I guess if I had to find a silver lining in all of that, at least we were in an air-conditioned facility for the hell he faced.

So, when these most recent scans rolled around last week, I was beside myself with anxiety. His treatment team has said “it’s not a matter of ‘if’ it comes back, it’s a matter of ‘when.'” Now, I take all of this with a grain of salt. Statistically speaking, Ben is a freaking miracle. I’ve learned (and have had to relearn time and again) to surrender to the information we’ve been given. There’s nothing I can do about it except for love my Ben with all I’ve got. I try hard to not worry all the time and I’ve been doing a pretty good job. But like any human being suffering from PTSD, triggers make those raw emotions rear their ugly head.

We’ve been through hell. The last thing we want is to go through it again and it’s unfortunate that we’ve been told the whole “when, not if” factoid. I desperately want to know everything that’s happening inside my son’s body, so I long for the scans, yet dread them at the same time, because they have the potential to break my heart all over again.

When we got the word last week that Ben had no evidence of disease, I cried in relief. And then I threw up. Twice. I had been walking around with all of this heaviness, setting myself up for the possibility of another relapse, and when it didn’t come, my adrenaline had nothing to do. I’m not complaining, just explaining the whole barfy thing.

Finally. We get to have a summer.

We’re going to enjoy every sunburn. Every heat stroke. Find lots of adventures, like going to the Sand Dunes. Perhaps take that vacation that Ben’s been aching to take? Ben will have his 14th birthday outside of the hospital (see his Facebook page “I love The Bean” for birthday details… all are welcome!) And Thursday, Ben and Mad are headed to Wapiyapi, the most amazing summer camp catering to our precious population.

And I’m going to simply breathe. It’s going to be a good summer, indeed.

 

 

Little Lambs

When I was a kid, I loved visiting old cemeteries and making grave marker rubbings using a brown piece of craft paper and an old crayon. I’m not sure why I’ve always been intrigued by visiting people who’ve passed from this realm, but I simply love the peaceful feel of an old cemetery. The headstones were so creative and ornate. And I especially loved that they marked the exact amount of time spent on this earth. If I were to die today, my stone would state:  Sarah H. Washburn, Aged 46 y, 10 m, 6 d.

Sometimes it would even specify how you died. Mine might state: Killed while interfering with a piece of scum berating her child during therapy (No kidding, this actually happened. Not the death part, but the scum/berating part. Gross.)

Regardless, I adore the fact that those old stones let people know exactly how long people existed in their earthly form. Nowadays, most stones make you do the math for yourself. Of that, I am not a fan. Math has never been my thing.

Anyway, the recent weird weather in Colorado thwarted our planned monthly adventure, so May’s trip was a repeat to Idaho Springs for a soak in the Indian Hot Springs. It was rainy, which is why our original plan was scrapped. Personally, I love a car trip in the rain as long as it’s not a torrential downpour, and with the kids distracted in the backseat with their electronic devices, they didn’t mind.

After our soak at the springs, we drove up near the entrance of Mt. Evans. It’s a lonely stretch of road – and absolutely gorgeous in the fall with all the golden aspens – but on this rainy day there wasn’t much to see. We pulled over at an old cemetery on the side of the road, intrigued as usual. The grounds were unkempt and the drive around the loop was nearly impassable as thoughts of bottoming out my car became a concern, but some of the markers were phenomenal. One was shaped like a log cabin. Another was still immaculately cared for despite their beloved being gone for well over 100 years. But as I looked around there were a tremendous amount of markers with little lambs on top: the traditional marker for a child.

As I stated earlier, the cause of death was sometimes mentioned: Typhoid fever. Diptheria. Cholera Infantum. Tuberculosis. A variety of Pox. Many of these tiny markers listed horrific diseases, many of which are now nearly extinct. Well, except the anti-vaxx community, who may be bringing them all back. Sorry. I think not vaccinating is a poor choice. Why on earth invite that sort of illness back into our world when it’s so preventable? If there was a surefire way to beat cancer, I’d be all over that in a heartbeat.

Don’t get me wrong, I can fully understand people wanting to stop giving their child something that might cause another challenging affliction – like autism – but is the risk of having your child die better? I mean, Ben goes through a tremendous amount of therapy that very well may end up killing him. It’s no secret that this very thing has happened to many other children we’ve known, dying from complications of therapy, and that totally sucks. But I know we’re helping to pave the way to a FUTURE for other children like him. I hate that he’s been a guinea pig of sorts, but what are our options? Plus, he’s still here. Despite his hearing loss. Despite his severely curved spine. Despite his “chemo brain” or lack of focus. Despite missing adult teeth and a shriveled kidney and short stature and a multitude of scars and all the pain he’s endured and the gazillions of treatments he’s had over the years. But if we found a cure for this, and people chose to turn their back on it because their child might have some developmental disabilities because of it? Well, that makes no sense to me. Honestly, I would be offended. My son’s life matters. He goes through what he does in hopes of not only saving his life, but to make others like him not have to fight so hard. He’s a true soldier in this fight against cancer.

I’m committed to his life. I want his years, months and days to amount to something. And it is. It has been. When we think his quality of years, months and days are wavering, then we might think otherwise. But I feel that’s a long time away. I know it is.

Children dying is nothing new. In fact, it was common to lose a child back before all the medical advances became readily available. And I know that if Ben were to have been afflicted with what he has today back at the turn of the century, he wouldn’t have lived for very long. Then again, I probably wouldn’t be here myself because of my own health ailments.

I didn’t mean for this to be an attack on anti-vaxxers, it just got me thinking about how fragile life is and how we should applaud what’s available to us, even when it’s not perfect. Every day of our lives matter.

Every single day.

Love Notes

I hate going to the mailbox because there’s a lot of icky things waiting for me in there… overdue bills, endless yellow papers from Medicaid regarding Ben’s therapy, an occasional rattlesnake…. Just kidding on that one. I have led myself to believe that there is one living in there, though, and opening the box will only encourage him to strike. It’s just safer to not go. That’s what I tell the bill collectors, anyway.

But there’s the occasional card or note from a friend offering encouragement. I treasure these. I have a box where I keep these lovely things, and when I’m down I’ll retreat to the box to get a little love. I also have a few miniature Almond Joy’s in there to cheer me up, too. The very bottom of the box holds love notes from former suitors. I haven’t added any to my collection recently, but the ones I have were totally worth saving. The best are from a secret admirer I had when I lived in Summit County. I never found out who it was, but I secretly loved walking out to my car after work to find one tucked under my windshield wiper. This was during a kinder time, when stalking really wasn’t “a thing” and glorified on shows like “Snapped.”

Anyway, I was talking to a dear friend recently, telling her that I was headed to my “box” to dig up a love note. After explaining the concept of my special box to her, she confided that she had never received a love note. Never. EVER!

I was aghast and completely pissed off! She is one of the loveliest people I’ve ever known. Luckily for me, I’ve known her since I was six years old. And while this note isn’t of the romantic nature, I want her to know PUBLICLY that she is loved dearly by yours truly, and I can’t imagine my life without her.

Her name is Ree. I met her while I was in the first grade. I was new to the school but we became fast friends during the monthly meetings of Girl Scout Troop #315. Her mom, Jane, was one of our leaders. Talk about a riot! My mother, who wasn’t really into group activities, volunteered to drive on many of our outings. I’m pretty sure it wasn’t to spend time with a bunch of obnoxious pre-pubescent girls, but the camaraderie she found with Jane and a couple of the other moms. And, apparently, there was a lot of sneaky cigarette smoking going on after the campfire died down and we were safely tucked in our tents. It was the 70’s, so this smoking stuff was an acceptable pastime for this particular decade.

Anyway, Ree was one of my core peeps. Slumber parties, school activities, we even went to the same university. We fell out of touch for a while over the years, but fortunately, Facebook saved the day. Ever since our FB reunion, she has been a steadfast supporter during Benjamin’s therapy and often contacts me just to check in. She loves me.

And I love her. Her heart is so pure. She’s extremely trusting so we’ve both lamented on our poor choices when it comes to boys. But to know that she’s never received a love letter, well it just makes me wonder what the young men are about these days? Do they not realize when they hold a blossom in their hand? Do they not see the untainted love that could be unconditionally theirs? Or are they just too caught up to see the treasure before them? Dumb asses. There’s no other descriptor for it. The fact that she hasn’t received one isn’t from her lack of beauty or sincerity or any matter of loveliness – she abundantly embodies all of these traits. She just hasn’t met any good writers.

So, since I do okay with writing from time to time, I wanted to take this moment to let her know that I love her with my entire heart. You have the adoration of my children. In fact, Ben just asked me what I was writing about and I said “my dear friend, Ree.” He said, “I love her.”

He loves you. Maddy loves you. I love you. And I know so many who love you, too. You’re a lovely woman, beautiful mother, and caring friend. Thank you for that.

You deserve all the love in the world.

 

Closed for Restoration

I have a TON to update about Ben but I absolutely have to get the following off my chest:

Two summers ago I decided – on a whim – that I would attempt to climb Mt. Bierstadt. It’s one of Colorado’s many peaks that soar over 14,000 feet and it’s widely reported that Bierstadt is the easiest to hike. I had the entire day to myself but I didn’t really plan very well, which is why I ultimately didn’t summit (not enough water and not enough layers of clothes) but what I did accomplish was wonderful.

On my journey, I saw a small trail that veered off the beaten path. It looked peaceful and serene but had a sign that stated “Closed for Restoration.” The simple wood sign with a beautifully brief message struck me immediately. I liked it so much that I took a picture of it and sent it to my then boyfriend, mentioning that I wanted to use it for something someday – a short story, perhaps – and filed it away. I’d forgotten about it until my computer crashed last week and all my pictures were lost. Gah!

Luckily, my ex-husband helped me restore all the photos and I have this lovely picture to remind me that it’s okay to close down to repair and restore. I also got a host of other pictures I’d never seen before. More on that in a bit.

I’ve been on a path of rediscovery lately. Part of it has been my yoga teacher training journey, which has been simply marvelous. I’ve met a beautiful group of new friends who are nurturing and supportive. It was clearly one of the best decisions I’ve ever made. I started the journey with the hopes of wanting to use my training to help other people, which I still plan to do, but I just didn’t understand how much it would help me in my own journey: mind, body and soul.

Over the years of writing this blog, I’ve expressed openly the obstacles I’ve faced in my life, from watching in helpless horror as my grandfather tried to kill my grandmother when I was five years old, to my son’s horrific and lengthy battle with cancer. And there’s been a wide gamut of other nonsense in between. When it comes right down to it, though, I’m pretty freaking tough.

But there’s always been a part of me that guards my tender heart. I’ve had plenty of boyfriends (and too many husbands) but never connected like I did with the boyfriend I sent the “Closed for Restoration” photo to. Honestly? I believed he was my twin flame. I felt safe. Secure. Our situation wasn’t ideal, for sure, but the love I felt on my end was undeniably special. I shared every.single.thing with this individual without hesitation. We broke up quite a while ago (with the stipulation that I wasn’t allowed to write about him for 90 days, which is hilarious to me) and I did okay with moving forward over the past year or so. I’ve dated some. I’ve worked on my own issues of low self-worth, blah, blah, blah… But there were times that I missed him. A lot.

I learned quickly after our break up that he wasn’t the source of strength I thought him to be. But I missed the friendship. I missed bouncing ideas off of him. I missed the passion I seemed to feel when it came to him. And when my computer crashed and all my pictures were lost, it was a fortunate break for me to find what he’d been hiding. The computer that crashed had been a present from him. When I asked my ex-husband to help me restore the thousands of photos I had lost, I got a big surprise. There were loads of secret photos and text messages that he had been sending to other girls during critical times that he was with me, i.e. my mother’s death and Ben’s grueling therapy.

Gross.

At first, I took it personally. I wondered what was wrong with me that he would do this to “the love of his life.” But then I stopped myself (after a consult with my yoga group) and realized that these weren’t my flaws. Sure, I got a little karmic kickback for having an affair, but this behavior was on him.

All of my prayerful and meditative moments, besides asking for my son and daughter to be healthy and happy, have revolved around not looking for outside validation to make myself feel better. I don’t need anyone’s approval but have always sought it, often to my detriment. I learned a valuable lesson when those photos surfaced. I take full responsibility for what I did, but I can’t fault myself for his actions. I gave him my best. And it simply didn’t matter to him.

It was an enlightening moment. But the beauty of it – for me – was that I didn’t beat myself up for it. Okay, I didn’t beat myself up for long. I processed it and finally gave myself permission to erase it. All he gave me wasn’t real. He played into my love of Halloween by showing up in the costume that he thought I’d respond to. Balancing the tricks and treats kept me distracted to the point where he could venture out and do this to other women. MANY other women.

Gross.

So, does that mean I’ll close down permanently for restoration? No way. But the newly-found love I have for myself and the existing love I have for my children requires that only someone pretty freaking wonderful is allowed into my life. That goes for family, friends, and potential boyfriends.

As long as they pass a background check and aren’t on “pig-busters.com.”

 

 

four years later…

Dear Mom,

It’s been four years since we surrounded your hospital bed and allowed them to turn off the machines that were keeping you here with us. You had made it very clear that you were ready to leave this earth to go on to your next adventure. I hope you felt us holding your hands before you made your journey, I was trying to send you off with as much love as possible.

While it was difficult for all of us to let you go, I sure hope you’re having a great time in your garden filled with the eternal blooms of spring. I bet with four years under your belt, that garden is really coming into its own. You always had an eye for the future when it came to your garden, so I’m sure it’s a sight to behold. I like to think that you’ve got many cats milling about, curling up with you while you take a nap in the conservatory on the monkey couch I adored so much.

There’s so much to tell you. Ben keeps fighting that insidious disease but is doing well right now. We’re getting ready to travel again for his therapy. He’s doing his best to keep up with school, is quite the little skier, and is still just as serious as when he was born. He’s such a sweet and loving boy, Mom.

As for Madeline, well, you were right about her. She’s destined to be a star on stage and/or screen! She has a beautiful singing voice – just like Aunt Sissy – we just have to work on her shyness. She’ll blossom in her confidence when she’s a bit older, just like you did. Just like I did.

I’m hanging in there, too. The chaos keeps me busy but it’s a life I’m proud to be living. For never wanting to ever have children, I have found that being a mother is what I was meant to do in this life. It’s hard to see myself as an adult when I think about you. I just see a little freckle-faced girl hiding behind your skirt. But here I am, 46 years old, and there are still times that I want your comfort. I doubt that will ever change.

I still want to pick up the phone when something good happens. Or when something bad happens. Or when my sarcasm goes into overdrive and there’s nobody else who would enjoy it like you would. I know there were times that we butted heads more than anything else, but you know it’s because I’m just like you in so many ways. Our tender hearts wounded all too easily.

I do miss you, Mom. The kids miss you, too. Especially Madeline. Her connection to you was probably the most important of her young life. Nothing will ever replace you. For all of us.

But I hope you’re not missing us at all. However, if you want to, I wouldn’t mind a message telling me what you always said: “I love you one million and twelve.”

All my love,

Sarah

 

Special place in heaven

“It is with a heavy heart…” “Fly high…” “RIP…” “Gained their angel wings….”

Too many posts have stated things like this lately. So many children have died recently, most of the ones I follow have died from f*cking Neuroblastoma. Sorry (kinda) for the swear. I know I have a lot of anti-swearers who follow this blog. Let me thank you now for your continued support despite my affinity for blue streaks.

Man. At the risk of offending many folks, I’m going to make a confession. I absolutely despise the term that these children gain their “angel wings” or that they will now “RIP” or “fly high.” I’m not sure if it’s because of the heartbreak I feel when another child dies from cancer (or dies period) or I’m just angry in general. I also hate when people say that “they didn’t lose their battle with cancer, they won their battle!” That makes NO sense to me. Are you saying that they won because they get to go to heaven? And if this is the case, why do we even try to save anyone at all? If heaven is the amazing reward we receive, then why is there medicine to try to keep us here at all? Upon diagnosis, shouldn’t we be saying “Hooray! I get to go be with Jesus soon!” and just give up?

Are we that selfish?

I am. I’ll admit it. I want my son to stay here with me. Sure, there are those who believe he’s simply “on loan” from God or whatever, but if this is so, why do we try to save anyone? Why are there doctors and nurses and money spent on research? There’s a major disconnect for me.

All I know is that I want to prolong Ben’s time on earth – with me – for as long as I can. I insist on living like my heaven is NOW. My heaven is here on earth. My son and my daughter and my stupid pets – including my runaway hamster – make up my heaven. I’m not waiting for the white light. I have it now. And anyone who wishes away their time here on earth waiting for Jesus to take them home is missing out on the gift that He’s given us right now. Yes, heaven is for real, because it’s right in front of our stupid faces. Despite the piling up of bills. Despite the dirty laundry. Despite the harshness of life. Why would it exist if we weren’t meant to get something wonderful out of it?

If my son dies based on neuroblastoma or a complication of neuroblastoma, he will have lost his battle with this insidious disease. It doesn’t make sense to me to let this beast off the hook. Some people survive it, but many don’t. Why try to make cancer’s statistics look less threatening? It’s a beast. There is NOT a special place in heaven for cancer.

And this is another phrase that confounds me. Special places in heaven/hell. In reading comments on a post of a recently deceased child, I came across “There’s a special place in Heaven for your child.” Honestly, I sure hope so. When I think of a special place in heaven for one of our dearly departed friends, I think that he’s surrounded with millions of Legos and a stage for him to dance on. But I would think there’s a real estate issue with this heaven place if we’re all meant to have our own special place. Maybe some of us will only get a standard room with no ocean view? Maybe some of us will have to have a work-study job because we just didn’t learn all we were supposed to? I mean, there has to be housekeeping in heaven, right? Maybe people who have a special place in hell are able to do some work release and get bused to Heaven to clean up after all of those donning angel wings. I would think those big wings would hog up a lot of space that could be better used for either more folks or more dance space.

Apparently, I’m not going to Heaven. At least, that’s what I’ve heard from others. So, I’m forced to think about all of the intricacies of what either platform holds. I might have a deluxe suite in hell because I’m so good at being bad. Or, I’ll have a closet in heaven because I just wasn’t good enough. Maybe I’ll qualify for the exchange program if I can find a host family that will let me run all their heavenly errands for them? I can’t imagine what those errands might be. Getting their lyre tuned? Feather replacement for wings? Does heaven employ yoga teachers? Probably not. But I have to wonder who does the menial heaven stuff? I mean, they have wi-fi, right? There’s got to be someone who takes care of that kind of stuff.

Yes, this is what my brain does in an effort to process so much grief. But I don’t see anything fabulous about cancer killing children. And I will spend the rest of my life – until I take up residence in my deluxe suite in hell shoveling Satan’s sh*t – trying to shovel the sh*t that cancer doles out to these precious children.

And as for my precious child who is battling a very real demon hell bent on taking him away from me, his special place is in my arms. Loving him. Supporting him. Encouraging him to keep fighting.

And finding heaven in the midst of our very real hell.

What is love?

My first husband and I were the best of friends. Most of our dates consisted of exploring the mountain community we lived in and going on long road trips. We stayed up late into the night talking and laughing. We had so much fun together. Being a non-romantic person in general, I was stunned that I had finally allowed myself to fall in love. We got engaged quickly (the most romantic and thoughtful of all of my many marriage proposals) and made plans to marry in Hawaii. However, just days before we were due to get married, he confessed that his family didn’t support his marrying me, and we broke up.

I wandered around aimlessly for a couple of months before trying to get my heart back into caring that I still had a life without him. My heart felt completely obliterated. When he called to apologize and ask me to come back, some of those broken pieces fused back together, and I accepted.

It was never the same, though. We did eventually marry, but nobody was happy about it. His parents were pissed. My parents thought I was an idiot to want him back. But we all smiled for the pictures that have long since been put into boxes or discarded – a very brief period of history that is only rarely spoken of.

I choose so poorly when it comes to men. When I met my first husband, I really thought it was all changing because of that stupid word: love. I loved him with my entire heart. I was willing to overlook things that should have set off significant alarms. But I was going on the fact that we had fun together. We enjoyed each other. Why everyone else insisted on talking us out of that is beyond me. I’m pretty confident that he did love me. He just loved his parent’s opinion and acceptance more.

What I have habitually overlooked, however, is that love needs to begin from within. I was never very good at that. I know I have loads of people who love me, and Ben and Madeline have taught me a tremendous amount about love. And my heart is full of love for those close to me. I LOVE to love. Actually, I’m quite good at that sort of love. But romantic love just kinda pisses me off a whole real lot. And the loving of oneself can be – at times – nearly impossible. At least it can be for me.

So, mostly everyone knows that I’m addicted to movies. I generally like slasher films and ridiculous comedies… that seems to cover all the bases I care about. If you can’t laugh at it, then you should kill it and chop it into tiny pieces. But for the past year of my life, I’ve been obsessed with the movie “Private Benjamin.” I’ve always LOVED this movie, but lately it has been speaking directly to me. If you haven’t seen it, you must. It’s about a woman, Judy Benjamin, who is a total princess. All she wanted in life was a nice house with lots of clothes, a live-in maid, and a professional husband. All of her dreams came true but only for about six hours when her husband had a heart attack and died on their wedding night. Her response to this devastation was to join the army. It was disastrous. But she learned along the way that her own ability was all that she needed to get by. The movie is a true riot. But my favorite scene was the very last one, where she walks away from the very situation she had always longed for, because she was no longer willing to compromise herself. The credits roll as she walks alone down a long driveway in her wedding dress to an unknown ending. And we’re all cheering! We’re proud of her for not giving in. She stayed true to who she was despite not knowing what comes next.

And I love that. It’s what I’ve decided to do. For the first time, I’m making decisions based on what I want for my life. Yes, there are outlying factors that I can’t control (namely cancer) but for what I can control, I’m finally getting a grip.

In about three months, I will be certified to teach yoga. And with that new skill I am going to help other parents with critically ill children come up with a way to alleviate their stress – through yoga poses, and possibly meditation – on their own terms. They won’t have to leave the hospital. They won’t even have to leave their child’s room if they don’t want to. I know what that’s like. I know how terrifying it is to leave your child’s side when every moment counts. I want to let these parents understand that they are allowed to take care of themselves even when their child is struggling. Despite the fact that their child is struggling. Their well-being matters, too. It’s too easy to forget that.

We didn’t handle the fallout of our sick child very well. Matt fell into alcoholism. I fell into the arms of a married man. We all fall into something. Why can’t the thing we fall into make us stronger instead of tear us apart? I learned the hard way and I want to help others from making the same mistake. Not that my teaching relaxation techniques is the cure-all that will stop people from making poor decisions, but it IS about learning to love yourself and working from the exact point where you currently reside. If you truly love yourself, I believe you’re less likely to do things that will cause you harm.

I’ve learned so much about myself in the past two months – it’s so wonderfully ridiculous. I now understand why I went searching for outward support instead of looking within to my reserves of strength that I already had. Trauma and fear put me in a bad spin that encouraged me to make poor choices. It doesn’t have to be that way.

I know some of you will point to religion here. That this is where my faith and strength should lie. And I can understand and appreciate your view on that. But, in my situation, religion has been way more hurtful than helpful. It’s nothing against God. My problem is with religion. I’m a big fan of God, but religion has shown me the opposite of what God is truly about: Love. Even the pieces of yoga that have religious concepts are of no interest to me and not what I would be teaching. And this doesn’t mean that if you’re a religious person then you’re of no interest to me. I love and accept you, as you are.

And that’s all I ask of you. Don’t be all judgy.

What is love? Love is truly the answer, my friends. And you can’t love others completely and fully unless you first truly love yourself.